Pharmacy and Orkambi

[liveitup]

Where will we be able to have our Orkambi scripts filled? I haven't gotten mine yet. Will they be like Tobi and Pulmozyme where you can have them filled at any pharmacy (or specialty pharmacy), or will it be like Cayston where only a few pharmacies are authorized to distribute? Thanks!

36/ddf508/f/mama to 3

 

[Ratatosk]

Our doctor's office was going to call the script in to our pharmacy. My pharmacist was in contact with his rep from Vertex, who was looking into it for him. He wasn't too hopeful, but we'll wait and see. The vertex patient assistance page shows "will work with your pharmacy". I'm hoping because we dealt with a mail order pharmacy for 6 months before Tobi became generic and it was a flipping nightmare -- charges for meds not ordered nor received, meds not sent in a timely manner... Will keep you posted. I heard thru the grapevine that those who have foundation care will be able to receive it by Friday...

 

[liveitup]

Thanks! I was trying to do the thumbs up...not down! I'm sure our insurance company will make us use our mail order specialty pharmacy. Working with them is always a nightmare!!!!

 

[trghpu1994]

we have to use the specialty mail order Acreedo..which is always a nightmare. the manufacturer rep said that we can call them for refill and let the rep handle acreedo

 

[liveitup]

I'm sorry...Accredo is our specialty as well, hence the "nightmare." Good luck and let me know how it goes!

 

[trghpu1994]

thanks. we get three meds from them. one for me and two for my daughter. our insurance makes us order every month rather than a three month supply.

 

[fuddlynn]

Please, please,please! - Any pharmacy other than the CF Pharmacy!

I can not stand dealing with the CF Pharmacy, they screw everything up and are TERRIBLE to deal with! A few nice people that work there can not save this pharmacy and I think I would rather go without the drug that is saving my life than deal with the CF Pharmacy ever again!

 

[Ratatosk]

My pharmacist is unable to fill Orkambi. Called Vertex support who indicated only 9 pharmacies will be allowed to distribute. I'm sitting here with a script, on hold with our insurance's mail order pharmacy (nightmare), also left a message with Dr. office to see if they can get the ball rolling on the vertex program enrollment. We met our out of pocket/deductible in January. Just preparing to jump thru some hoops. Oh, joy!

 

[Ratatosk]

Just got off the phone with our mail order pharmacy -- they're not on Vertex's list of approved distributors. So now waiting to hear from the clinic. Have a list of the pharmacies --- Accredo, BriovaRX of Maine, CVS Specialty, CF Services, Diplomat Pharmacy, Fairview Pharmacy, Foundation Care, Kaiser Permanente, Modern HC Pharmacy/TLCRx and Walgreens Specialty Pharmacy

 

[DjFunkyFife]

Just got off the phone with our mail order pharmacy -- they're not on Vertex's list of approved distributors. So now waiting to hear from the clinic. Have a list of the pharmacies --- Accredo, BriovaRX of Maine, CVS Specialty, CF Services, Diplomat Pharmacy, Fairview Pharmacy, Foundation Care, Kaiser Permanente, Modern HC Pharmacy/TLCRx and Walgreens Specialty Pharmacy

I faced this same issue with Cayston when switching from CF services to other pharmacies. A pharmacy is a pharmacy, no? Why are certain pharmacies not allowed to distribute certain medications?

 

[stephen]

For various reasons I’ve dealt a number of mail order specialty pharmacies over the past 10 years. Included were Express Scripts, CF Services Pharmacy (before they were acquired by Walgreens), Foundation Care Pharmacy, CuraScript, Accredo, and now CVS Caremark.

While there may have been some initial issues with all of them, for the most part I found them all satisfactory.

Just hang in there. Orkambi is new for them too. My guess is that having a written script may not be of much use. Once you have selected a pharmacy that is both approved by your insurance provider and that can supply Orkambi, your doctor should contact them electronically to order it.

[FONT=&quot]I would surely enlist Vertex for any help they can provide[/FONT]

 

[StaceMo]

TLCRx Pharmacy (also known as ModernHEALTH Pharmacy in California) is one of the CF Specialty Pharmacies that carries Orkambi, along with all of the other CF medications. They have been amazing to work with because they really care about their patients and do whatever they can to help with all aspects of care. I would highly recommend them to any CFer. I feel very fortunate to have them as part of my support system. They also have patient advocates who I can talk to whenever I need support or resources.

 

[Ratatosk]

I ended up going thru Vertex GPS and they contacted our insurance who determined which pharmacy we were to use. Our prescription drug insurance is thru Prime Therapeutics, which isn't one listed as an approved distributor, so our insurance chose Walgreens Specialty Pharmacy. I haven't had to reorder yet, as the doctor wrote the script for 3 months, but things seemed to go smoothly with the first order.

 

[Aboveallislove]

I ended up going thru Vertex GPS and they contacted our insurance who determined which pharmacy we were to use. Our prescription drug insurance is thru Prime Therapeutics, which isn't one listed as an approved distributor, so our insurance chose Walgreens Specialty Pharmacy. I haven't had to reorder yet, as the doctor wrote the script for 3 months, but things seemed to go smoothly with the first order.

,

any updates on how he's doing???

 

[Rabia72]

I am in NY and my son is on the Child Health Plus program. We pay a monthly premium but then no co pays or anything like that. The problem is that because it is through the state EVERYTHING has to be pre authed and discussed. I spent almost 30 hours on the phone back and forth last summer to fix mistakes they made with paperwork on an authorization for growth hormone which my son has been on for 12 years. However, Vertex pushed through everything with Orkambi. I was told on a Thurs. afternoon that my insurance denied it, Vertex got more involved and three days later, the next Monday, the pharmacy called me to schedule delivery for the next day, so that Tuesday, (two weeks ago today) I had the drug for my son. Anybody having problems should DEFINITELY call Vertex, they are awesome and they get it done! Good luck to everyone!

 

[Ratatosk]

,

any updates on how he's doing???

We've had a couple hectic weeks, where his schedule has been off -- not his normal routine where he spend all day at daycare playing hard. So we weren't sure if he was sweating out at much salt/salt crystals. He doesn't seem as salty -- when I kiss his forehead my lips aren't stinging from the salt. He is eating quite a bit more and gained a few pounds, though haven't weighed him this week. Normally his gas and stools don't smell, but they have since he's been on the drug. Seems to be leveling out though. He's had some weird stools -- not well formed, not typical greasy malabsorbed cf stuff. My thoughts on that was that because most his issues have been digestive -- two surgeries in the past for bowel obstructions --- that the Orkambi is clearing out the sticky mucus/crud that's accumulated over the years in his digestive tract. He said his stools have been back to normal this week.

 

[Aboveallislove]

Thanks for sharing!